Mother’s Day Reflections from the Mother of an Adult with Severe Developmental Disabilities

​“Happy Mother’s Day!”  I first said those words as a very small child prompted by my father, not really understanding the significance of being a mother other than knowing I had one.  Over the next fifty-three years or so, I said those words to my mother each year, sometimes in person and others on the phone when distance separated us—until death separated us.  I’ve also said those words to family members, friends, and even acquaintances, most have responded in kind little knowing the little jolt I feel when those words are directed toward me....because the one person that I’ve never heard those words from before is my own daughter.
 
Because of her severe developmental disabilities, at thirty-three, Lauren is like the small child I once was who did not yet understand the concept of motherhood.  Her Dad buys the prerequisite card and gift, signs her name to the card, tells her what she’s giving Mom for Mother’s Day, and speaks for Lauren while presenting her gift.  How much of this little family play she understands, I do not know.  I think she understands that I am “Mom”, but her understanding of parenthood and the responsibilities of motherhood is questionable.   To say that she understands that I am her mother is, perhaps, what I want to be true more than what actually is.  Without understanding the concept of motherhood, how can she grasp that being “Mom” is more than just a name she should know me by?  She simply knows that I am the one permanent female fixture in her life.  She knows that I have been with her for all of the bad moments of her life and I have been by her side for too few good ones.   She probably does not know that Mom is not just my name; it is my role in her life.
 
When Lauren was younger, it bothered me to know that I would never hear my child call me Mom.  But I realize now that it was not just the spoken word for which I yearned.  I needed her to know what a mother was and comprehend all of the love and sacrifice and fierceness that entailed.  Perhaps I wanted her to be reassured that I, beyond anyone else, would always be there to ease her difficult journey through life.  But I think I also needed her to understand that this is a two-way relationship, as if that understanding could fill the emptiness of never seeing my child’s arms reach out for me or of hearing “I love you” from her sweet pink lips. 
 
Lauren has no concept of the work or the determination it has taken to get us through the last thirty-three years.  So many of those years have been a blur of frustration and exhaustion endured while trying to meet Lauren’s needs in a world that all too often seemed to say no before a request was even made, a world that said not here, not now, not ever. There wasn’t a lot of time for deep dives into perspective and reflection.  But with Lauren living in her own home now, I have a little more time, a little more distance from the minute to minute reminders of her complete dependence on my love and support in her life.  I’m sure it’s also my age that is prompting more reflection.  It’s time to look back at where I’ve been, who I’ve been, and what can still lie ahead.  One thing is glaringly obvious to me at this point; I have not been the mother I had planned to be.
 
I think if Lauren had been a typical child, I would have only skated across the possibilities of all that a mother can be.  I would have been too focused on achievements and the opportunity to bask in the reflected glow of my child’s accomplishments—as if they were the measure of my success in mothering that child.  But Lauren is not a typical child and the mother I have had to be has had to learn more than teach, love more than been loved, and admit that in the recesses of her heart—those places we must be forced to go—lay the meaning, the truth, and the wisdom of motherhood. 
 
On Mother’s Day, I will be the one to go to Lauren and reach out to wrap my arms around her.  I will look for clues that she feels connection in the expression on her face, the tilt of her head, or within the passing grace of her shy gaze.  I know that I will feel our connection.  I will feel the unbreakable ties binding us to each other.  I will feel a depth of love for this child that I may never have known was possible without her in my life.  It is her real gift to me for all of the Mother’s Days in our life together.
 
Being a mother....having a mother—two vastly different states of being that have determined the course of my life.   Where once I said the words “Happy Mother’s Day” to my mother, now I say those words for my daughter, because she cannot say them herself, and I would do anything for her.  And also because those words do not just celebrate me, they celebrate us and all we have both managed to become while I have held her within the circle of my love.   

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